News

Friday 24 February 2017

NHS ENGLAND ANNOUNCES FUNDING FOR SECOND STEM CELL TRANSPLANTS

On Friday 24 February 2017, NHS England announced that it would fund second donor stem cell transplants for patients who relapse a year or more after their first donor transplant. This follows a campaign, supported by the APPG on Stem Cell Transplantation, to overturn a decision taken by NHS England last year that second transplants were unaffordable.

On 24 January, co-chair's Mark Tami MP and David Burrowes MP joined other MPs in the House of Commons to debate the need for access to second stem cell transplants. Four weeks later, NHS England made the announcement that this treatment would now be funded, along with two other treatments that were not prioritised for funding in 2016.

The decision means that up to 20 patients a year can now access the treatment, which is often their last chance of survival, but offers the hope of a cure.

More detail about the announcement can be found on the Anthony Nolan website here.

The All Party Parliamentary Group on Stem Cell Transplantation met on Wednesday 9 March to hear from a number of guest speakers on the issue of equity of access for Black, Asian and minority ethnic (BAME) patients. It was a stimulating discussion on a very important subject, as currently patients from BAME backgrounds have just a 20 per cent chance of finding the best donor match compared to 60 per cent for white northern Europeans. It was within this context that the APPG met to tackle some of the underlying issues behind this large disparity. The meeting was chaired by APPG Co-Chair Mark Tami MP.

Jane Ellison MP, Minister for Public Health spoke about progress on the stem cell strategy and how, while BAME donor provision had improved, there was more work to be done. Jane paid tribute to the work of organisations such as Team Margot and the African Caribbean Leukaemia Trust, and to the APPG itself, for their work increasing awareness of stem cell donation in BAME communities. Recent patient appeals such as #MatchforLara and Vithiya’s Appeal showed how someone’s personal tragedy could act as a catalyst for a campaign that could go on to change many more lives.

Stem cell transplant patient Nilush Aponso, double cord recipient, attended the meeting as a guest speaker and shared his personal experience of stem cell transplantation. Due to his Sri Lankan heritage, Nilush struggled to find an adult donor when he was diagnosed with Acute Myloid Leukaemia in 2012, but eventually found a match through cord blood. He spoke passionately about the need to invest in cord blood as an alternative for BAME patients.

The APPG also heard from Anthony Nolan and NHS Blood and Transplant on developing the number of BAME donors and the importance of cord blood. One of the key achievements of the APPG Stem Cell Transplantation has been to make the case for ongoing government support for umbilical cord blood collection. Therefore the APPG were encouraged to hear that advances in the collection and banking of cord blood have contributed significantly to the improvement in the number of BAME patients receiving transplants. It was also hugely encouraging to see that the long-term outcomes for patients undergoing cord blood transplants have substantially improved in recent years and are now similar to those receiving stem cells from an unrelated donor.

Myfanwy Morgan, Professor of Medical Sociology at Kings College London also shared insights into her work looking at barriers to BAME organ donation. It was hoped that her findings could help inform BAME engagement strategies for stem cell donor recruitment.

After the meeting, attendees joined Mark Tami MP for a short drinks reception.

The Human Tissue Authority (HTA), the regulator for human tissue, cells and organs, has today published a cord blood banking guide for expectant parents considering cord blood donation and banking. The aim of the guide is to enable parents to make informed choices about cord blood.

The guide, which offers information about donating cord blood to a public bank and banking cord blood privately, has been developed in collaboration with clinicians. The project was launched in response to the a survey conducted by the HTA last year, which revealed a clear need for more information on banking cord blood.

Cord blood, which remains in the placenta and umbilical cord after a baby is born, is rich in stem cells which can be used to cure a broad range of life-threatening diseases. Its importance as a source of stem cells for blood cancer patients in need of a lifesaving transplant has been recognised by the Department of Health and the continuity of government funding has been vital in ensuring long-term improvements to the supply of cord blood donations.

David Burrowes MP, Co-Chair of the APPG on Stem Cell Transplantation said :“I welcome this guide because the more impartial information there is available to the public, the better informed families can be to make decisions about banking or donating cord blood. The guide explains what cord blood is used for, and contains information about the different options and processes involved in banking or donating cord blood.”

One of the key achievements of the APPG Stem Cell Transplantation has been to make the case for ongoing government support for umbilical cord blood collection. In March 2015, the group published a report assessing the progress that has been made in this area over the last three years.

Friday 20 November 2015 MARK TAMI MP SPEAKS OUT IN DEBATE ON THE NEW CANCER STRATEGY

Yesterday afternoon Mark Tami MP, Co-Chair of the APPG on Stem Cell Transplantation, gave a speech during a House of Commons debate on the new cancer strategy, sponsored by Chair of the APPG on Cancer John Baron MP.

Mark used his time during the debate to highlight the need to better support people living with the long term effects of a stem cell transplant, an issue that APPG has campaigned on for a number of years.

Mark highlighted the "considerable lack of understanding of some of the issues that transplant patients face" which, he argued, can lead to patchy and inconsistent care across the country. He also drew attention to the lack of psychological support available for patients recovering from a transplant, noting that, according to a recent survey of UK transplant centres, only 28% felt able to offer psychological screening.

Drawing upon his personal experience as the father of a stem cell transplant recipient, he stressed the need to "look beyond cancer. Cancer is what people are treated for, but there are a host of other issues around it. We need to look at the whole, rather than just the illness itself, and at how we support people after that illness."

Mark's speech was in the context of the new cancer strategy, which stresses the need for all cancer patients to have access to a Recovery Package that includes a holistic needs assessment, treatment summaries and cancer care reviews. However since the Independent Cancer Taskforce published the strategy in July there has been little detail about how the strategy will be implemented.

The Parliamentary Under Secretary of State for Health Ben Gummer MP, who was answering the debate on behalf of the Public Health Minister Jane Ellison MP, confirmed that blood cancer patients who have received a stem cell transplant will be eligible to receive elements of the Recovery Package.

David Burrowes MP and Mark Tami MP, Co-Chairs of the APPG on Stem Cell Transplantation, have been presented with a national award by the blood cancer charity Anthony Nolan.

David and Mark have won the Political Supporter of the Year award at the Anthony Nolan Supporter Awards 2015. The ceremony took place at the House of Commons on Tuesday evening where they were joined by campaigners, fundraisers, volunteers and lifesaving stem cell donors at the ceremony.

The prestigious Anthony Nolan Supporter Awards were back for their third year to celebrate, recognise and thank the outstanding supporters who keep the pioneering blood cancer charity moving forward.

Speaking about his win David said: ‘I am delighted to win this award. It is a privilege to receive recognition from a charity so dedicated to curing blood cancer and disorders. Anthony Nolan’s recent ambitious report, ‘Destination: Cure’, has been a real encouragement to me in my role as Co-Chair of the All-Party Parliamentary Group on Stem Cell Transplantation. We have managed to ensure that the UK Government makes the most of the opportunities that innovative medicine provides to save the lives of those with blood cancer and disorders’.

Mark said “I’m really pleased to receive this award from Anthony Nolan, not for me but really on behalf of the APPG, which has been really successful in bringing together people across the medical field for the benefit of all those in need of, or recovering from, a stem cell transplant.”

Anthony Nolan uses its register to match potential stem cell donors to blood cancer patients in desperate need of a stem cell transplant. It also carries out vital research to make stem cell transplants more successful, and supports patients through their transplant journey.

Henny Braund, Chief Executive at Anthony Nolan, says, “David and Mark are hugely deserving winners of this award; their extraordinary support and passion for our lifesaving work epitomises the ethos of our charity, which is built on one person directly helping another. I continue to find myself inspired and humbled by the dedication of supporters like David and Mark, who have gone above and beyond in their commitment to the charity. By supporting our work, they have played a vital part in giving 1,200 people this year a second chance of life.”

Life Sciences Minister George Freeman MP & David Burrowes MP, Co-Chair of the APPG on Stem Cell Transplantation

Wednesday 16 September 2015

APPG MEMBERS DEBATE THE NEED FOR FURTHER STEM CELL RESEARCH

Yesterday afternoon David Burrowes MP, Co-Chair of the APPG on Stem Cell Transplantation, was joined by many APPG members for an End of Day Adjournment Debate on ‘Adult Stem Cells and the Life Sciences.’

The debate, answered by Life Sciences Minister George Freeman MP, focussed on the need for support and investment in adult and umbilical cord stem cell research with the potential of not only saving the lives of more people in need of a stem cell transplant, but also in saving and improving the lives of people with other medical conditions.

The key ask of the Minister was to show his support for a national stem cell transplantation clinical trials network – this has been recommended by the APPG on many occasions and is in line with the recent recommendations of the UK Stem Cell Strategic Oversight Committee.

A trials network would enable large-scale clinical trials for innovative stem cell therapies across multiple transplant centres, which in turn will accelerate the adoption of new treatments into clinical practice and ultimately improve patient outcomes.

The Minister offered to meet with the APPG to follow up on a number of key issues raised in a meeting to take place in the Autumn.

UNLOCKING THE LIFESAVING POTENTIAL OF CORD BLOODA blog by Co-Chair David Burrowes MP

It is not only Government which is thinking about the next 5 years. Over 11,000 people with blood cancer or a blood disorder will need a curative stem cell transplant. Of these, 1 in 8 people will not receive the lifesaving transplant they need because either there is no donor available for them, or because a donor cannot be found quickly enough.

It is against this backdrop that the APPG on Stem Cell Transplantation met last week. It offered a good opportunity to reflect on what the group has achieved in the years since it was first formed and to re-focus on the months and years ahead.

One of the key achievements of the group has been to make the case for ongoing government support for umbilical cord blood collection. In March this year, the group published a report assessing the progress that has been made in this area over the last three years.

Cord blood, which remains in the placenta and umbilical cord after a baby is born, is rich in stem cells which can be used to cure a broad range of life-threatening diseases. Its importance as a source of stem cells for blood cancer patients in need of a lifesaving transplant has been recognised by the Department of Health and the continuity of government funding has been vital in ensuring long-term improvements to the supply of cord blood donations.

Since we published our report in 2012, cord banking rates have tripled, the cost of transplants to the NHS has decreased dramatically and more patients from black, Asian and minority backgrounds are able to find a donor. This is largely thanks to the increased availability of cord blood.

But, unsurprisingly, there is more to do. As Anthony Nolan has argued, medical research is key to improving the outcomes of patients who receive stem cell transplants.

This is an area which the APPG has considered in detail and it is clear to me that medical research is critical to unlocking the considerable potential of cord blood to save lives. Unfortunately, progress in this area has been lacking.

At last week’s meeting of the APPG, Anthony Nolan launched the new ‘Destination: Cure’ report, which calls for a national stem cell transplantation trials network to be established. This would be an important move.

Not only would it facilitate and promote high-quality research into cord blood as a curative therapy for patients, but it would also support the Government’s commitment to advancing the life sciences sector.

The new Parliament is an opportunity for the APPG on Stem Cell Transplantation to re-double its efforts to make the case for policy changes which benefit every patient in need of a transplant. I invite my colleagues in both the Commons and the Lords to work with the APPG to ensure that we continue to make progress in this very important area.

DAVID BURROWES MP RECOMMITS TO CHAMPIONING LIFE-SAVING UMBILICAL CORD BLOOD IN THE NEW PARLIAMENTYesterday (20th May 2015), David Burrowes MP attended the World Cord Blood Congress in London, in order to share with an audience of almost 150 members of the cord blood community the progress in the UK with the development of cord blood and stem cell research. David has been championing the use of umbilical cord blood for many years. David introduced a Private Members Bill in 2008 to provide greater information and opportunities for collection of life-saving cord blood. Since 2010, collection rates have tripled with 14 collection centres at hospitals around the UK, which are located in cities with a high birth rate and large Black, Asian and minority ethnic (BAME) communities. 60% of BAME patients in the UK are now able to find an appropriate donor match, compared to 40% in 2010. At the World Cord Blood Congress, David took the opportunity to insist that even though there has been promising developments in cord blood donation, “more must be done to further research and create a national stem cell transplantation trials network”. David noted the encouraging recent commitment by the Government to continue funding the growth of the UK cord blood inventory to 30,000 cord blood donations by 2018, taking government funding for stem cell services to £19m since 2010. However, he commented that a national stem cell transplantation trials network must be established to facilitate and promote high quality research into cord blood as a curative therapy for patients with blood cancers and blood disorders. This echoed a recommendation made in the the March 2015 report by the All-Party Parliamentary Group on Stem Cell Transplantation ‘Cord Blood Transplantation: Meeting the Unmet Demand – Progress Review’. David ended by saying “I will remain committed to championing the life-saving value of umbilical cord blood. I will be urging the new Government to establish the UK as the world leader in cord blood donation transplantation and research. I wish to see world-leading and self-sustaining outcomes so that the cord blood donation can continue to save more lives."

Tuesday 24 March 2015

APPG WELCOMES FUNDING ANNOUNCEMENT FOR STEM CELL SERVICESThe All-Party Parliamentary Group on Stem Cell Transplantation has welcomed today’s announcement by the Life Sciences Minister of a further £3million funding for UK stem cell services.

The funding, which sees total investment from government reach £19million since 2010, will support the continued work of NHS Blood and Transplant and Anthony Nolan, the blood cancer charity, in saving the lives of people with blood cancers such as leukaemia, and other life-threatening blood disorders.The investment, which will be shared between the two organisations, will be used to grow and diversify the UK stem cell donor register. Focus will particularly be on recruiting donors from black, Asian or minority ethnic backgrounds, which are currently underrepresented on the register. It will also be used to support the growth of the UK’s public cord blood inventory and will allow for more potential donors to be genetically typed to a high resolution. Co-Chair of the APPG on Stem Cell Transplantation, David Burrowes MP, said:‘It is fantastic to see government renewing their commitment to the work of Anthony Nolan and NHS Blood and Transplant in saving the lives of people with blood cancer. The funding will be crucial in ensuring that every person in need of a stem cell transplant is able to find a well-matched adult or cord blood donor.’

The group called on government to ensure the continuation of funding to support the growth of the UK public cord blood inventory in their March 2015 report Cord Blood Transplantation: Meeting the Unmet Demand - Progress Review.Mark Tami MP, Co-Chair of the APPG on Stem Cell Transplantation, said: ‘We are pleased that government has acknowledged the recommendation of our recent report, which highlights the need for continued funding to expand the UK’s cord blood inventory. The APPG will continue to work to ensure that stem cell donation and transplantation remains a government priority.

David Burrowes MP and Mark Tami MP at the launch of the new APPG cord report

Tuesday 10 March 2015POLITICIANS RENEW CALL FOR FURTHER RESEARCH AND
INVESTMENT TO CURE BLOOD CANCER

Today (10 March) the All-Party
Parliamentary Group on Stem Cell Transplantation has published a new report
into the use of umbilical cord blood-derived stem cells for use in saving the
lives of people with blood cancer and blood disorders.
The report, titled Cord Blood Transplantation: Meeting the
Unmet Demand – Progress Review and supported by blood cancer charity
Anthony Nolan, measures progress in the field of cord blood stem cell
transplantation and outlines a number of key measures to fully realise its
lifesaving potential. Crucially, it calls upon government to commit to
investing in research and growing the UK public cord blood inventory to help
ensure that every patient in need of a stem cell transplant is able to receive
one.

Collection
of cord blood is vital in the fight against blood cancers such as leukaemia.
For many people with these conditions, a stem cell transplant is their only
hope of a cure. The blood from umbilical cords is rich in potentially
life-saving stem cells that can be used in a transplant.

David Burrowes MP, Co-Chair of the APPG on Stem Cell Transplantation, said: ‘It’s promising to see that, since the APPG first investigated the lifesaving potential of cord blood stem cells in 2012, significant progress has been made. But more must be done if we are to save the lives of every person with blood cancer in need of a transplant.’

Since the group launched their original report in 2012, cord banking rates have tripled and a quarter of all cord transplants in the UK are now sourced from the Anthony Nolan and NHS Cord Blood Bank. However, there has been a disappointing lack of progress in clinical research, and the group are now calling for renewed focus in developing and promoting world class research into cord blood as a curative therapy for blood cancers and disorders.

Mark Tami MP, Co-Chair of the group, added: ‘We believe the recommendations of our new report will have a real positive impact on blood cancer outcomes if implemented, and represent a significant step in ensuring the UK continues to lead the way in delivering world class clinical research in this field of regenerative medicine.’

Elizabeth King, Head of Cord Services at Anthony Nolan, said: ‘Cord blood stem cell transplants can be crucial in saving the lives of people with blood cancer, particularly those with rare tissue types or from ethnic minority communities. We are delighted that the APPG on Stem Cell Transplantation has renewed its call on government to promote and invest in cord blood donation and transplantation, and will continue to do our part in delivering innovative research and ensuring the development of our cord blood bank.’

This website is managed by the APPG Secretariat, Anthony Nolan.

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